Published: 08/12/2018

Living WITH my hEDS

by Hope H.

Now that I know there is a reason for all my seemingly not connected issues, I can and have chosen my response. I choose to live WITH my EDS and not fight it. I am not a warrior. I want to live in peace and harmony. I used to fight my EDS all the time before I knew what I was even fighting. I found it to be futile most of the time, and in fact many times, fighting just made things worse. So now, now I go with the flow.

In addition to the hypermobile aspect, which has made my EDS-knowledgable chiropractor freak out a few times, I have a lot of GI problems, including food allergies, food intolerances, IBS and a few other issues. Let’s just say I visit restrooms on a regular basis. My body-brain connection, including my proprioception, is really a mess, and many of the exercises my personal trainer (who is certified AND a zebra) has me do works on this as well as strengthening my muscles. My other comorbid conditions join in the fun in terms of heat intolerance. Even opening the door to let my dogs out sometimes is overwhelming. My galloping heart rate and inability to sleep well or for more than a few hours at a time results in exhaustion and fatigue. Each day is a new adventure as I never know what may have come out of place during the night or what I’ll be dealing with in terms of everything else. But, I am thankful for each and every day.

When I am completely brain-fogged, I do not do things that require a lot of cognitive work. Instead, I will do things that do not require thought like cleaning or filing or reorganizing a cupboard or laundry. When I am exhausted, I rest. It does absolutely no good to keep pushing, to get just “one more thing” done, in fact, it makes me feel so much worse and it takes me even longer to bounce back. When I dislocate or sublux something, I get an appointment with the appropriate provider as soon as possible and in the mean time, I use my toolkit of heating pads, ice packs, essential oils, braces, etc.

My philosophy is that if I live WITH my EDS, my life will be fuller, easier to manage and more joyful.

Fighting has a negative meaning for me and instead of living in strife and on the battlefield, I want to live with ease, harmony, and peace. Does this mean that I just rollover and accept what’s happening? NO WAY! I get just as angry, disheartened and fed up as any other zebra with the constant surprises EDS throws at me, but instead of focusing on the problem (the negative), I choose to focus on the solution (the positive). Everything I do, from the food I eat, the clothes I wear, the work I do and how I arrange the many pillows in my bed, takes my EDS into account. I spend time planning my life and pacing my activities and this alone has made a huge difference in my quality of life. I am much more in tune with my body and much more mindful and appreciative about life overall.

So while I applaud the warriors, because we all have to be true to our hearts, I’m just going to keep peacefully living with the EDS flow. I send all my fellow zebras love, light, and gentle hugs.



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